Inspired partially by this story:
This topic has been a bit of a mindworm for me for several weeks, ever since we visited the church of my father-in-law while on vacation. And again this week, while a local church is having vacation Bible school (VBS).
Churches and houses of worship are pretty central to the community life of a lot of people, especially families. It is often considered an extended part of the family where friends are made and met. Churches provide a valuable source of social interaction that can be less pressured than the formal structure of school.
Or is it?
It’s difficult for me to think of a place where a meltdown is less welcome than at church. At school, in stores and parks tantrums are pretty common amongst all children. They also happen at church, but for some reason they inspire a level of shock and horror of Biblical proportions. People can and will complain, gossip and talk about a child’s behavior. When it comes to support, church can definitely be a mixed bag.
Some of the earliest indications of troubles for Thomas were evident in church. When he was in the nursery, it seemed like Jane was always getting called down there to tend to some sort of mishap. We moved to another community when he was 18 months old, and this church’s nursey had a beeper system. Parents would get a vibrating pager and if there was a problem, we would be paged. And it seems like we got paged alot. All. The. Time. In fact I remember the first Sunday we didn’t get paged. We were nervous and convinced that the batteries had gone dead or that the pager was broken! Thomas was prone to meltdowns in the church setting, crying almost the entire time or to a point where he would throw up. The fact that he was prone to reflux didn’t help matters.
Before he was diagnosed, we thought he was just fussier and more temperamental than other kids. I don’t think other parents were so judgmental in the early days as much as they were thankful this wasn’t their child!
Neurotypical kids often meltdown when they separate from parents, especially when the parents don’t attend very regularly. I remember volunteering for a two year-old nursery one Easter Sunday. 9 little girls, all dressed in their best Sunday Easter dresses cried, screamed and tantrumed for a good 30 minutes before we could redirect them into some play activities. And then it repeated when parents started to pick up their kids, and those left behind thought they were being abandoned. Most of these kids had not been in a church since Christmas or Easter the year before!
But Jane and I were regular attenders. We were there pretty each and every Sunday unless someone was sick. We also were involved in other church activities outside of Sunday mornings. But Sunday mornings were a source of constant anxiety.
First, we had to get there. A lot of families can relate to the struggle involved in getting everyone there on time, without some sort of meltdown. And these are regular, neurotypical intact families! Getting Thomas ready involved extra time as he does not do well when he’s rushed. And it seems like we were always rushed.
Then we would drop him off to his Sunday school class, while we went to our adult Sunday school class, which I sometimes taught. But invariably, the beeper would go off, and usually it was Jane who would have to see what the problem was. It got to the point where Jane just quit going to our adult Sunday school class and stayed with Thomas in his class. The anxiety of waiting for the pager to go off was just too much.
After Sunday school, we went to the worship service. At 3, Thomas was too big for the nursery, and attended with us. This posed a big challenge as he often wanted to “talk” and make noise at exactly the wrong time, which was during the pastoral prayer. Keep in mind, this prayer and the sermon were often taped and broadcast over the radio the next week. I remember actually being able to hear him while listening several times! Then there is the business of staying in your place and following the liturgy which involves standing up and sitting down at certain times. Outside of school, church is often the most structured place a child attends, but unlike school, the rules are not so explicit. However, there is a decent level of consistency in the service they he eventually started catching on to.
Midway through the service, before the sermon, the kids up through 3rd grade go to children’s church. So the big task was getting him through the children’s sermon, which segued into the kids leaving to go to children’s church.
Getting through to that point often involved bringing candy and snacks. This was actually pretty successful as long as they didn’t give him too much during Sunday school. As long as he was munching away, he seemed fairly content. Mixing the snacks up also helped slow him down as he would first get the peanuts, then raisins and finally the cheerios. Otherwise, he would finish the snack before the pastoral prayer, and then we were in trouble.
The children’s sermon took place in the front of the alter, where all the kids would gather around the person delivering the short message. Sometimes it was the pastor or assistant pastor but sometimes it was someone else from the congregation. Since we sat in the back in the balcony (an attempt to keep from being too much of a distraction) it took extra time for Thomas to get up front. Either Jane or I would have to go with him him and then try to keep him contained during the short children’s sermon. More than once he got away from us and would walk around the sanctuary, much to the amusement of the congregation but mostly to my own horror. He really never got into the children’s message and pretty much had to be forced to stay in his spot. And then it was time for him to go to children’s church.
Children’s church was not as structured as Sunday school. The kids were often wilder and more unruly and the people who volunteered for this were not always very well prepared. The chaos and noise didn’t sit well with Thomas, so either Jane or I would have to go with him and stay.
The end result was that we (but mostly Jane) were missing a lot of church. The reason to go there is to participate in a corporate worship experience in order to facilitate a more complete experience of Joy with God. But often for us, it was anything but joyful. It was almost hellish. Jane was seriously whithering on the vine, spiritually. It was stressful pretty much from beginning to end.
An associate pastor saw our plight and started a program where other adults or teenagers would go with Thomas to children’s church. This was called “Angel Buddies.” They even brought in Thomas’ preschool teacher to help answer questions and help them understand how to deal with kids with autism. We had about 7 volunteers at the beginning of this program and it did seem to work out pretty well at first. Jane and I could finally attend church together and it was often the only time we were together without any kids all over us.
But the Angel Buddy program’s success was short-lived. The associate pastor left within the year and the next person who took over the schedule was not very diligent. In fact, Jane or I were included in the rotation every month. We were told this was so that the other helpers wouldn’t get worn out with it. But often, the helpers would be out of town or not at church and we would have to do it anyway. While we were grateful for any assistance we got, we hated to impose on other people. The list of volunteers who were faithful and diligent to this ministry got smaller and smaller as people moved on to other ministries and as teenagers went to college.
I should mention that the few teenagers who volunteered were some of the best and most diligent people in the Angel Buddy program. I think Thomas and they both benefited a lot from being together. But it became less and less of a program and was dwindling away.
In the meantime, people were talking and complaining about Thomas’ behavior. He seemed to choose church as a testing ground for defiance. One of the only times he was ever spanked was outside in the church parking lot. And the side effects from that weren’t exactly desirable. Jane and I were not together during church time, and one or both of us were not among other adults. It was a source of stress and conflict with each other and within the church community.
One would think that the safest place in the world for children with disabilities would be in houses of worship, among people dedicated to God, love, mercy, grace, compassion, faith, and forgiveness. But this is not true at all. The worship service itself, with constant demands for compliance and conformity, is hostile for those who are inherently different from everyone else. Anyone who is unable to conform to the structures of the service is not welcome and asked to leave. The larger the church, the more true this will be.
I may editorialize more on my feelings toward church and those with disabilities later, but I want to talk a bit about how churches attempt to deal with this unique and growing population. In this particular church spoken about above, they attempted to recruit helpers in order to help Thomas participate in the same activities as his peers. I think the intent of the program was excellent, and it started out well enough. But without diligence by a committed coordinator, it becomes just another chore to dread like ushering, parking lot duty, being a greeter or assorted other mundane tasks and ministries in the church. Yes, we are the boy’s parents and he is our responsibility which we take seriously. But no one was caring much about our own spiritual growth or struggles. Staying home is a more Holy, peaceful and rejuvenating experience for many families that have children with disabilities. Church is often a hostile, hellish experience where families are segregated or ostracized. I don’t think Jesus would approve.
That’s not to say Thomas got nothing out of it. He did memorize the Lord’s prayer and the Apostle’s Creed. He also picked up on it enough to threaten his Sunday school teachers with crucifixion more than once!
Other churches set up a separate class and program for people with disabilities that is set apart. On one hand this makes it easier to concentrate human volunteers and resources in one area, but it also segregates people with disabilities into a sort of modern-day leper colony.
When we visited my father-in-law’s church, Thomas spent a bit of time during the service just wandering around. I was keen to hold him down or take him out, but Jane tried letting him loose. Talk about anxiety! An usher came up and said something to him, so I retrieved Thomas. The usher said that we could use a back room where we could here the whole service. I decided to try that.
Many churches do have a “cry room” where parents can take crying babies or mothers can actually nurse their babies while being able to see the whole service through one-way glass. This room was actually pretty cool because it had nice comfortable couches and Thomas found some toys to keep him content and occupied. It was like a little living room or a one of those box suites they have in stadiums. The usher even brought him a cookie! I was totally into this until a couple mothers came in and wanted to nurse their babies. So we spent the balance of the service in the large lobby area, just walking around. Last summer, at my parents’ small church he was getting disruptive, so Mom took him out to walk around the block.
Jane and the boys have been going to another church where the structure is a bit different. The kids spend the entire service in their own big area where the have plays, they dance, sing and basically have a big party. The staff have been pretty good with him and have worked so that he feels comfortable there. But he still has his moments. The setting is very, very loud. They probably amp up to over 100 decibels at times, which means he spends a considerable amount of time with his fingers in his ears. The open space, the loud contemporary music and the dancing around are more conducive to Thomas just walking around the room in circles, which he prefers in such settings.
I remember years ago attending a service at a small country church near my parents that they attend sometimes. There wasn’t more than 25 people in the place and people dressed fairly casually. Thomas wasn’t with me, but the was a boy about his age, wandering around the little sanctuary and amongst the people. No one made a big deal about it, as it was a fairly informal setting. Plus, the boy was the pastor’s son so that probably carried some weight. But I never forgot the comfort the boy and other members felt in that place. There a distinctive lack of anxiety or concern there. Basically, it was a bunch of neighbors getting together, and they weren’t too concerned about impressing one another.
It occurs to me that larger congregations and groups are going to have a harder time with people with disabilities. In large groups and institutions, conformity is a big deal. It’s the only way to have any sort of order in these places. But smaller groups may allow for more inclusiveness and flexibility. That’s just my general impression.
This is not an exhaustive treatment of the subject, but I’m just throwing this out there for discussion where maybe others can expand or extend with their own experiences. I’ll be jumping back into school related stuff soon, as us teachers report back this Friday!